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Private universe

I’ve always been fascinated by this disorder. The MMR vaccine scandal has been interesting to follow as an example of below-par science, and poor understanding by the public of the science. To me, this is just a symptom that science education and mainstream media science reporting needs some vast improvement.

But the main reason is probably that I know so many people on the spectrum. I grew up knowing a family in which all the boys had quite severe autism and have since met others with autism or Asperger syndrome. I always wondered: What sort of place could these boys have in a world where communication is vital? When you “have a different sort of internal thought” that in some cases leaves you completely dependent on your family or other carers for your entire life — what does it mean? What does it tell us about the human brain? Is it really a disorder, or just another state of being?

From that last article:

With autism diagnoses rising steadily, talk of an “epidemic” and a growing search for a cure, Roy feels threatened. “I feel stabbed when it comes to ‘curing’ or ‘treating’ autism,” he says. “It’s like society doesn’t need us.”

Many autistic people are starting to agree. They have had enough of being treated as a medical problem, arguing that autism is not a disease that needs to be cured but just a normal part of human diversity. This emerging “autistic rights” movement hopes to launch an international campaign akin to Gay Pride, encouraging autistic people everywhere to embrace their “neurodiversity”, and persuading wider society to accept them as they are…

Carina Schmidt’s son has autistic disorder and requires round-the-clock attention. His condition is so severe that he required a 10-month stay at the Kennedy Krieger Institute to break some of his self-harming habits. She is adamant about doing everything possible to help her son, who now lives in a group home in Rockville, Maryland. She also supports the development of prenatal tests for autism. “If my son could be cured today I would say ‘yes’,” she says. “My family has suffered like there is no tomorrow – that’s why we choose to have no more kids.” … Schmidt says that she will continue seeking help for her son. And she is sure he wants her to. “I can see my son wants to be normal,” she says.

There are no easy answers here. But I think the research being done now is fascinating and exciting. Even if people with autism don’t want a cure, this research goes to the heart of what makes us human: our complex, intricate, amazing brains.

One thought on “Private universe”

This topic that has bothered science fiction writers — well there was a Star Trek episode that posed a question about removing genetic predisposition for baldness… On a more serious note, I once had a friend who as bipolar. When he was UP, he was a creative genius but when was down he was catatonic. And he hated the normalising dullness of his medication. After his suicide it was clear that he saw his life as blighted.